mjan

OK.. I left a post while back on not being sure what my DX was after auto testing. Verbablly the docs RN told me some tests were in normal range.. and others were not. Make sure I get enough water and salt..and see my PCP for cardio tests and narcolepsy tests. I felt he abandonded me..till I went to get my records. Turns out he is trying to save me money but NOT following me..and having my PCP follow me with his suggestions of Clonidine maybe in the patch form..but he's not sure the beta blocker and Clonidine will be tolerated. He see an Autonomic Dysfunction syndrome..along with possibly Sjogren's and Narcolepsy with cataplexy. HE knows my insurance comes with using docs and and clinics withitn the health company I work for. I though he was just dismissing me as not that bad.. OK.. i am screwed up.. or screwed.. not sure LOL NOW I am having the worse muscle/nerve pain ever!! I .. who hates taking man made meds.. is DESPERATE for old RX of oxycodone. Last night at the end of my work shift.. I could not BEND my knee..it was locked...PAINFULLY locked. I could not turn in bed.. or walk very well. This AM I see its NOT the knee but muscles/probably tendons that are locked so painfully. BUT.. I do not have a doc to go to. My PCP doesnt see me until the 24th.. just getting off maternity leave. I even thought I MIGHT be having a blood clot or PVD..which now I dont think so. I am still a risk for stroke.. have lots of lesions on the brain.. years of spasticity..and autonomic problems.. esp HIGH BP/HR... So.. I have been calling the auto RN.. about the Clonidine..and was told to call my PCP.. so I do call the back up for MY Pcp and he wont' prescribe cause he doesnt know anything about my case.. fair enough. NOW what am I to do?? I am resting these 2 days off ..but then have to work the next 6 days.. and I am DRAGGIN my leg!! Any ideas?? Desperate Jan

Well your post is very much appreciated. I am going through testing again.. to figure ME out !! Sorry for ALL you have been going through. I had a sleep study done last year and it showed sleep apnea..(I also have daytime apnea) but whatever it takes to qualify for the daytime MSLT test I di not qualify. The whole purpose of the sleep study was to confirm one neurologists suspicion that I had narcolepsy WITH capaplexy that brings me to the ER all the time. And the "spacing out" I do is actually MICRO SLEEP..which the brain shuts down a few seconds or more to catch up on deprived sleep. Clever eh? ONLY...this is where I make mistakes..BIG ones sometimes at work. I just did again last week..and I was so embarrassed. Eventually it could cost me my job. And I have no one to support me. So now the Autonomic neuro wants ONLY the MSLT performed if possible. BUT unilke the TYPICAL cataplexy precursors of EMOTION..laughing etc that set off typical Narcolepsy WITH cataplexy. What leads to these episodes (N with C) I guess..is AUTONOMIC symptoms.. tachy..Bp goes up high..usually and I feel like I will lose consciousness. Then if I dont take my emergency betablocker..I end up unable to move..remain alert..but.. I can HEAR. Thats why they really think I have cataplexy. What I am afraid of is being diagnosed and losing insurance in future.. or..driving privileges. OH.. I was on Provigil..when they thought my chronic fatigue was part of MS..the neuro had to get me qualified..I loved it..but if I took ONE pill too late in morning then I was up till 2-3 AM..thats how much a stimulant it was. But since I NEVER had energy.. I thought that was great. Cant remember if it had any side effects..like higher BP or not. I stopped only becuase I was seeing a nutritionist and trying to use less and less man made meds. PLEASE stay in touch.. After seeing my PCP in a few weeks..I'll see if I really want to go through sleep study or not. What will it help? They will ONLY give me meds anyway... I just dont know Warmly, Jan

CORRECTION: When I take my extra Beta blocker..I can prevent going into cataplexy..but still end up so weak..barely able to move.

I am SOOOOO interested in this. My daughter has similar episodes, like you say, the slow type but we are trying to figure out what is autonomic dysfunction, what is autonomic seizure and what may possibly be cataplexy. I think you and I may have connected once last summer on another forum about this topic, no? We will be seeing an autonomic neuro next month. I am hoping he can help us to sort out what is what. Hi..why dont you PM me and we can discuss this further. Unlike the typical narcolepsy with cataplexy..my episodes always always come on with autonomic symptoms first. With my emgerncy beta blocker dose..it helps me get to that point of cataplexy. I also have "micro sleep" they think. Its my biggest concern.. I seem to have absence seizures but they are not seizures. I can be talking and such ..but my brain shuts down for a second or two...up to more to catch up on needed sleep..only I do not know it..make errors..and then have NO memory of what I did. Jan

OUCH~!!!!!! So how bad is your pain? I am so sorry for ALL you have been going through. Take care and keep us posted ok? Warmly, Jan

Cute...amusing..but I CAN relate so thank you. I AM sorry for not getting any REAL help. As I always say...one day these docs will be patients too So you have a thyroid problem? Or not? What else is hanging in the wind?? Warmly, Jan

Just wanted to tell you that I support you and look forward to hearing how it went. I dont know about all those tests..but God Bless you for your courage and ENDURANCE!!! Good luck!! Warmly Jan

Wow.. you gave me an idea..I never thought it was my beta blocker..that could be messin up my sleep. Thanks..something to consider. Jan

Thought I would just have to accept brain fog/cognitive/speech problems as part of whats ailing me..NOT!! So..after seeing my nutritionist..now he's specialized..not your typical one...he had me detoxing TOXIC build up and inflammation on the brain..and then built up my systems with WHOLE FOODs in tablet form ..whaala!! My cog/brain fog stuff diminished..nearly gone. I know MEDICATIONS..STRESS..and wherever else we pick up TOXINS (food..drinks..air) combined with what our disorders are..makes our brain mushy to say the least. Now he didnt cure me.. hardly.. nor diagnose me.. he cannot..but build UP my systems exactly where I am deficient.. yes.. he did that and my strength and energy improved. Dont forget our LIVERS also are trying to metabolize heavy duty chemicals..ingested..and its gets sluggish itself with quite the build up. I cannot stress enough how detoxing your livers helps as well. I used to use a liver/colon cleansing system..pills..from the health food store..which SAFELY rids us of toxins. Its not the running to the bathroom kind either. My clients who had drug and alcohol problems tried this on their own.. and yes they felt better and had MORE energy!! My nutritionist is specialized in evaluating the individual..knowing exactly what you the individual needs in only the amount YOU neeed..ONLY for as longa s your body tells him you need it. Unlike meds..you take and take..not knowing when and if they are still working..he knows exactly. For example..you can take vitamins but your body many not need ALL the vitaimins..only say.. B vitamins...or C. etc. Thats how EXACT he can get. All I know is that my MD neuros are amazed..and send me back to him. Jan

Again.. she has your spirit and you unconditional love. You cannot put THAT in any prescription!! VALIDATE her feelings..REFLECT whatever she says like...So you feel crappy? So you dont want to do anything.. see what she reflects BACK to you. Pray... Have her FOCUS on anything SHE likes..or used to like. tell yourself and others not to FIX her at this moment..(unless she asks) and let her be in the process... her journey. Her spirit IS being guided.. she IS learning what she should do..and she has YOU~! For you ARE her ANGEL~! And she is surrounded by angels..to guide and comfort her. If she is grieving..do you know those stages/feelings? SHOCK DENIAL..ANGER..(Which includes resentments..feeling sorry for self..why me? etc)DEPRESSION..BARGAINING..AND ACCEPTANCE. PRAY... for YOU to be guided too.. to be HERE with us... so WE can help YOU through this too !! Warmly, Jan

Again.. the TIGHTNESS comes on quickly Yes?? Then the panic sets in..right? With my costocondritis..in inflammatin in the ribs.. or whatever I have.. my spasms will sneak up on me..causing this tightness so badly that I can no longer move.. breathe..nothing!! I have learned to work with is. I get up slower..I hold still.. I do not panic (anymore).. and it WILL release. NOW.. it can come back with a vengeance in a split second.. which I why I remain calm..(yeah right) and move ever so s l o w l y... PANIC is normal reaction..but try and stay ahead of that panic.. I also have trouble with my esophogus..acid reflux which causes me to choke..or forget to swallow properly. They did a swallow test and could SEE this.. More fun.. NOT!! Jan

WOW!! So sorry I missed this post. Had my own stuff going on.. HUGS!! I know why you dont want to go to the ER. And I wonder if you can ask to get the meds and machine to do a treatment at home when you get this way. Thats if you have junk/fluids in your lungs. Now you know you have SUPPORT here.. and folks with similiar experiences to help..see? AND.. time to use your faith.. trust in God that you will be lead to the BEST doc/clinic possible!! I have your back Jan

OK.. I had a really BAD attack while working Thursday. AND I majorly messed up at work!! I am making MAJOR errors..it could cost me my job if they add it all up. This time I couldnt fake it any longer.. my vision was blurry and focus in and out..tachy..and had to leave work. I never received results of Autonomic testing 3 weeks ago.. so I called both the PCPs office and the neurologists. His RN called me with the results of my tests and also got set up to see my PCP in 3 weeks. My PCP is on Maternity leave and so no one read the letter from the neurologist. I will need to get the results on paper as now I dont know what he was saying for sure. I DONT have to see the neurologist again. He wants me on Rx Clonidine as my Beta Blocker has not been working well enough to stop these "episodes" I get where my BP goes up high I get tachy..spacey..dizzy and now my VISION is burried or my focus gets completely messed up. IF bad enough.. I end up not being alert..or able to move at all. The TT test..says I was little tachy then returned to normal. My first TT test with a cardiologist was not normal. AND my BP/HR seems to shoot UP before it drops back to normal. I do not get the really low BP. And I dont really get these changes in major ways standing..somewhat.. it all happens SITTING DOWN. Anyone else? The Valsalva test was not too bad whatever that means. The TST had low volumne.. sweat took too long and it was too low.. thats the one I dont think I understand..too low? The dye SWEAT test..well.. I didn't SWEAT!! So this RN told me to increase my SALT and fluids and stay out of the heat. Now I have high BP.. why uptake the salt? AND.. does this mean I DO have an autonomic problem..just NOT POTS??? Which I am ok with. He did order Echocardiogram and carotid ultrasound..which I have had but he wants an updated one. AND he still thinks I might have narcolepsy with cataplexy..so .. I need a Mutliple Sleep Latency test to measure it and find out for sure. I have DAYTIME apnea along with nightime..and get this.. when I get my tachy episodes..when they get really bad.. I can no longer MOVE my arms ..legs..or keep my eyes OPEN.. I look unresponsive.. or ...doped up..BUT I CAN HEAR EVERYTHING!!! I just cannot move!! I am left exhausted barely able to walk..so its not your typical narcolepsy episode where they fall sleep and get right up feeling fine. MY episodes keep me exhausted ...wiped out as my BP/HR goes up HIGH.. then drops to normal range. So if I have narcolepsy with cataplexy its ALWAYS related to autonomic symptoms first!! Go figure feeback Please?? I did go to a sleep disorder/narcolepsy forum and they get the blurry vision and MICROSLEEP where you are awake but pause..like an petitemal or absence seziure. I have been doing that as you do not know until someone TELLS you. I am lost... Jan

Oh dear ...what a wonderful mother you are!! But my heart breaks for your daughter. Of COURSE her spirit has sunk.. she's starving for NUTIRION!! Of course she cannot stand up.. stay up.. she cannot function without nutrition that our brains and systems need just for functioning. This lack of nutrition (energy) responds so strongly it ends up being depressed..physically mentally and spiritually. I remember getting so bad that I could no longer hold my head up at work.. no longer walk..no longer shop for food NOTHING!! I had to take a break from work and MIRACLES OF MIRACLES I was referred to this most amazing nutritionist. NOT your typical nutritionist though he was board certified. HIs own father was an MD who died in his 40s from Chrohn disease.. he too had it or something very debilitating..until he discovered this kind of treatment. He has training in NRT= Nutritional REsponse Testing which is the same as muscle testing or Autonomic Response testing. After his evaluation..he said I was near organ failure.. thats how sick I was when I first came to see him. He found out what was makinag me TOXIC..detoxed me safely over time..(mostly with drops of different ingredients) then at the same time built UP my systems with ogranically grown foods GROUND INTO TABLET FORM.. FOOD..which does not interfere with any meds...AND.. he can test your medications and tell you if or how much they are interferring with your body systems.. he helps with side effects of meds.. he tests for allergies..he is amazing and not that expensive. My docs were sooo amazed that they now send me back to him when I have a flare. Did your daughter have any surgeries or scars?? That too can interfere with transmission of nerves from the brain and back to keep us healthybecause when you have surgery or a deep cut .. the nerve endings are cut.. and communication is stopped. Your brain KNOWS HOW to correct or heal the body ONLY if it can communicate. Even good meds can interfere or build up to the point they do not work as well. Even meds can end up making one more toxic. I had to have SCAR therapy first.. which is the use of lazer light. Others use Lazer light therapy for pain as well. Its worth a try. He got me back to work. I used to only stay in bed all the time.. he got m life back. Research NRT or ART and see for yourself. Regular MDs do not have training in this.. hardly.. well only a few. Nutritionists.. and some chiropractors do. Its amazing what they discover.. and change..improving one's lifestyle. You and your dtr are IN my prayers.. and NEED A MIRACLE!! I'll pray for one. Jan

Well sorry for ALL you have been going through. But I am curious about being told you have epilepsy. My husband had all kinds of seizures.. and complex partials. He could NEVER remember anything about them but he could talk or answer questions. There are some strange symptoms with those. Have they ever done a 3 day video EEG? And I have these "episodes" when I get my autonomic symptoms which end up with me looking unresponsive..cannot move my arms legs. keep my eyes open or talk..BUT... I can HEART everything so I dont think I am unresponsive or not alert. Its a form of narcolepsy with cataplexy(not able to move arms or legs). Is this neurologist a specialist of epilepsy? AND.. for my husband they could see on an MRI the lesions causing his seizures. So.. I am just curious if you are getting the right information. It never ceases to me how you get different answers depending on who you see and what their specialty is. APNEA is when you stop breathing. I have it at night (didnt know) and now during the daytime. All of a sudden I gasp to catch a breath not knowing I was not breathing. Told my new autonomic specialist. Its a part of the autonomic problem..and narcolepsy. Good luck with all you are dealing with and keep posting. I too am going through yet more testing. Warmly, Jan

So sorry for all you are going through. Both you and your mother have serious mental health issues..hard to resolve..but not impossible. Do you have any friends? Perhpas living with someone else may take the burden off of you. Getting SSDI is very hard. I dont know if 1st you even worked long enough to qualify..but SSI is for low income folks. Its not much to live on believe me. Getting SSDI under 50 is REALLY hard. The attorney will only get paid if you get approved. ANY disorder that can be TREATED especially by meds is usually denied..denied..until you are older. So.. could you work.. maybe part time? You can work p.t. on SSI. Its hard I guess..but think of these things. STRESS can make you both sicker Any support group YOU could go to? Take care of yourself.. WArmly Jan

-- HUGS TO YOU -- No wonder you are FED UP with MDs..especially ones who are limited in the BIG picture! Last year I swore off all docs.. except to get my BB filled. Tired of the run around.. the educated guessing..the different diagnoses. Then my job/insurance changed..and my new PCPs own mother has a very complex case and she referred me to HER neurologist..who happens to specilize in autonomic problems!! What a miracle!! So far.. so good. He not only knew right away that I have an autonomic disoder but suspects at least an autoimmune disorder and Narcolepsy with cataplexy. I do not have brisk reflexes..not even sure what that is exactly. Perhaps..they were NOT laughing at YOU..but ya never know. Remember..its all coming back to them..they will get "theirs"... I had a ER doc immitate me in front lf the whole staff..laugh..not know I could see him. He had no idea that doing his PAIN check..where they press on the bed of your nails to get a response (or not). my ability to FEEL pain was there but slower..and my speech was affected so it took me a few monents to muttle OOOUUUCCCHH. HE thought that was soo funny. I NEVER want to go to an ER again!! ONce they rule out there is nothing life threatening..they just dismiss you. I am still paying for ER visits someone ELSE took me to. I do FEEL for you.. and sending you healing vibes..and a way to find a compassionate..caring..knowledgeable MD..who ever that is. If you have a good PCP..have them go to bat for you..ok? Warmly, Jan

WOW.. no I have not heard of this. So sorry. A grand mal and you were conscious?? I never heard of that at all..but my hubby had seizures and never could remember them. What does the cervical traction look like? What does it do for you? take care..whew.. Warmly, Jzn

Man those docs you have seen are sooo NOT with it. To blame your weight.. yup.. great cop-out!! Do you know that my newest PCP heard about my blowing up and immediately ordered a thyroid test. Its in the nomral range but I just dont move. I work and rest.. thats it..my life!! Now you.. we ALL have to pray and I mean some heavy duty praying that there IS the BEST doc out there that will listen..not blame..just care enough to refer you to the more accurate specialists. Ask around on different forums for a doc nearby ok? WE KNOW something is terribly wrong. TOXIC build up.. plus the predisposed stuff we are all gentically inclined to get.. brought on by STRESS..not to mention the moran docs who think they know..NOT!!! Just know that one day.. they too will be a PATIENT.. I know. I work in hospice. It WILL come back to them.. lessons.. they and we all learn in this life. I hope you know its NOT mental..but affects you as mental stress for sure. I hope you know you are a WONDERFUL woman..that needs OUR support and advocacy. Keep on keepin on FAT JAN LOL

Well.... maybe cuz I am much older..but here's MY theory. Unless this testing will provide a treatment that will change symptoms..why do the tests? UNLESS you go for disability (which I would recommend) and they see how much you were tested and still little to no improvement..then maybe have the tests. Obviously CHEMICALS do not agree with you. YOU already know this..but still. THESE docs need to be aware...after all..YOU are the one to suffer not them. And know this.. PSYCHOSOMATIC IS REAL.. yes your "nerves" or its all in your head is true. It IS from the BRAIN (your head) and your nerves are responding to an obvious imbalance or wrongness in your systems. Remember..I got your back ~! Jan

Oh my goodness.. how dangerous!! NO wonder you are so upset. That kind of jostling and trauma can make the healthy stress out!! So...why dont you ask about 2 things..the fact that you PAID for a SEAT..and 2ndly..how DANGEROUS it was for all but especially you. There must be some rule/law that would get them into trouble.. ya think? AGain.. its ok to be mad..how scary !! Jan

What a wondeful story.. thanks so much for sharing it. Of COURSE Your daughter is so thoughtful..kind..and a good planner...she has good genes...and a GREAT example in YOU!! HUGs to her and your mother too ~! Warmly, Jan

Thanks Firewatcher...you too ~! HUGS to all..gentle...loving ones~! HEALING ENERGY .. Yes caring for ourselves..and each other.. no greater love At least here..we have understanding. Warmly, Jan

My new neuro that I have only seen 1 time did confirm I have an autonomic problem..from reading my medical reports and history..and listening to me telll him all that I have been through..that felt good to hear someone agree with me. I just went through the autonomic testing to measure whats going on. Awaiting the results and a call from him. BUT.. he did mention that often an autoimmune disease accompanies autonomic ones. Just wondering if folks here think its true? What kinds do you have? HE thinks I have Sjogrens..due to my severe dry eyes..ears and mouth. I HAD that DX one time from a Rheumy but the next took it away. They thought I had MS.. ruled out. He also thinks my autonomic episodes end up with a NARCOLEPSY..with cataplexy. ITs not the drop t othe floor kind..its a slower version..where I end up looking unresponsive but I can still hear. He still has to finish the testing for that. So..what do you guys know? Thanks..Jan

YESSSS that is where my pain orginated from...still does..years later. Its my WORST pain issue!! When they thought I had MS..they did think it could be the MS HUG..but since they ruled it out..no. Its NOT my gallbladder either..ruled out. Its an inflammation..and horrible spasms that squeezes sooo hard it take my breath away !!! I used RX Methocarbam 750 mg which is a musle relaxant that does not make you drowsy. Laying on my side can start it up. OR it just starts up with a quick spasm that locks my whole rib cage. Like I said.. its my worse kind of pain. Take care Jan